Individuals who are diagnosed with Ataxia are experts in their own disease. There are many members of the research team but individuals with Ataxia are experts by experience. Affected individuals are not research subjects but are research collaborators. It is not possible to learn new information about a disease unless the people who have those diseases are fully committed to participate in research. That allows new information to be gathered that will enable researchers to better understand the disease and develop treatments and therapies for Ataxia.
One of the challenges in developing a treatment for a rare disease, such as Ataxia, is the lack of natural history studies. A natural history study collects data that shows how a specific disease progresses in individuals over time. Natural history studies are essential for developing clinical trial designs that will facilitate drug development. With funding from the National Ataxia Foundation and the Macklin Foundation, the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA), a natural history study is occurring for SCAs 1, 2, 3, 6 and 7 (and SCA 8 and 10 at some sites).
The CRC-SCA Natural History study continues to recruit research collaborators across the country. In order to be a part of this study, please note the inclusion criteria:
If interested, or if you have specific questions about eligibility please contact the site coordinator nearest you. View our map and coordinator list here. Research collaborators who are willing and able to undergo a lumbar puncture to donate cerebrospinal fluid (CSF) for research will be given a monetary stipend.
Patient Registries are essential tools for Ataxia researchers and pharmaceutical companies. The purpose of a patient registry is to advance the development of treatments for a disease by connecting researchers and pharma partners with those who are affected with that disease. If you or a family member are affected by Ataxia or are at risk for Ataxia, we recommend that you enroll in the CoRDS registry. Please use this link to enroll.